Rise Up for Grant!

It's with a heavy heart I share this. Our son, Grant has been diagnosed with Battens disease  (CLN2).  It's a rare neuro-degenerative disease that first takes the childhood, then takes the child. At this time, it is fatal and life expectancy is between 6 to 12 yrs old. 

As you can imagine we have been overwhelmed with grief, fear, and shock of the gravity of such a fatal diagnosis. Fear of all we will have to watch him endure. This disease will cause him to lose all abilities (walk, talk, see, and think) and die. It's incomprehensible and we struggle to process. 

At this time there is no cure but scientists are working on it. There is a trial study that started in Columbus OH at Nationwide Children's Hospital that uses enzyme replacement therapy (ERT) and the results of the trial were so positive that the FDA approved this therapy for commercial use. Grant has been receiving Brineura since May 2017,  and this has provided a better quality of life than we would have without treatment.

No child and no family should ever have to live and die with this wretched disease. It's unfathomable and unacceptable.  We ask for your help in any way. Any help will be put towards Grant's medical needs, for today and for the future. And if you can't donate, then pray for us, truly pray for our family, or just share my post, and ask for another repost.  Add our little boy Grant to every church prayer list you can, and your nightly prayer list.

We need an uprising from the masses. RISE UP FOR GRANT! Help us help our son live to see the cure. This is my shoutout from the rooftop, my plea to all that will listen and help. We need to fasttrack the cure. We need your help. We need a miracle!

Humbly, the Severance Family

"Never believe that a few caring people can't change the world. For, indeed, that's all that ever have." - Margaret Mead